For people with HAE
HAE is an unpredictable disease that may affect
EMOTIONS
- A near-constant anxiety about their next attack can cause people with HAE to cancel plans
- Embarrassment and feelings of shame in front of friends and strangers
Not a person with HAE.
Understanding treatment
Today’s treatment may come with trade-offs
Suggestions for
HAE is typically passed down from parent to child, but not always
- HAE is a rare disease that causes parts of my body to suddenly swell up
- It is not contagious, and I cannot pass it on to you
These attacks can affect different parts of my body, including my face, hands, feet, or stomach
- If an attack affects my throat and prevents me from breathing, it can be life threatening
The attack from HAE is not the same as swelling from an allergic reaction
- The medicines that treat allergic reactions are not effective in treating an HAE attack
Approximately 1 person in 10,000 to 50,000 people has HAE worldwide
- There are approximately 6,000 people living with HAE in the United States
These attacks may be caused by anxiety, injury, surgical procedures, and more
- Sometimes, the attacks happen for no known reason
- Attacks can happen from happy excitement, wedding, birthday party, etc.
One way of treating an attack is to give myself an injection of a medicine prescribed by my doctor
HAE is typically passed down from parent to child, but not always
- HAE is a rare disease that causes parts of my body to suddenly swell up
- It is not contagious, and I cannot pass it on to you
Approximately 1 person in 10,000 to 50,000 people has HAE worldwide
- There are approximately 6,000 people living with HAE in the United States
These attacks can affect different parts of my body, including my face, hands, feet, or stomach
- If an attack affects my throat and prevents me from breathing, it can be life threatening
These attacks may be caused by anxiety, injury, surgical procedures, and more
- Sometimes, the attacks happen for no known reason
- Attacks can happen from happy excitement, wedding, birthday party, etc
The attack from HAE is not the same as swelling from an allergic reaction
- The medicines that treat allergic reactions are not effective in treating an HAE attack
One way of treating an attack is to give myself an injection of a medicine prescribed by my doctor
Questions to ask your doctor
It can be helpful to take a list of questions to your doctor’s appointment, so you remember everything you want to discuss. The following are some questions you may want to ask.
About HAE
About treatment
What type of HAE do I have?
Which treatment is right for me?
How can I avoid having an attack?
Are there any current clinical trials and should I participate?
How long will these attacks last?
Do I need to carry an on-demand treatment with me all the time?
What are the chances that I will pass this on to my children?
Does it matter if I skip treatment?
Is there a cure for it?
I’m experiencing side-effects. How can I manage them?
Download this easy-to-use app from the Hereditary Angioedema Association (HAEA.org) to:
Record your treatment
Track attack development and improvements
Set reminders for prophylactic treatment
The third-party resource cited above is for the reader’s information only. Pharvaris does not endorse and is not responsible for the content included in this resource.
Tracking your HAE attacks may help you find patterns over time or notice any sudden changes. After you’ve had an attack and treated it, write down the details in a journal that you can share with your doctor at your next visit.
Date of attack
Location of swelling (face, belly, hands, feet, etc.)
Time and place symptoms began
Type of trigger (if known)
Attack intensity (low, medium, high)
Was this attack similar or different to past attacks?
How long did the attack last?
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Learn more about the trade-offs people with HAE may have to make. Sign up for periodic updates.
References
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